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» Diagnosed Recently
Thu Feb 14, 2019 6:35 pm by davesjen

» New and need advice and help
Wed Feb 13, 2019 12:42 pm by feeling desperate

» New here would very much appreciate advice at the end of my rope
Wed Feb 13, 2019 12:33 pm by feeling desperate

» MonaLisa Touch
Sat Feb 09, 2019 3:46 pm by Julquint

» New member desperate need of other vulvadynia sufferers
Sat Feb 09, 2019 10:09 am by Tfc13

» The pain CAN get better - What's worked for me
Sat Feb 09, 2019 8:17 am by Ginger

» Remission and relapse and again and again
Thu Feb 07, 2019 1:10 pm by mary jane

» Long term pain after partial vestibulectomy?
Wed Feb 06, 2019 1:56 pm by mary jane

» Recovery story please read !!
Fri Feb 01, 2019 1:33 pm by mary jane

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 7

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3


New member desperate need of other vulvadynia sufferers

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New member desperate need of other vulvadynia sufferers

Post  Tfc13 on Fri Feb 08, 2019 6:55 pm

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in a lot of pain and discomfort , I feel so raw down there feel like I can't shut my legs ! Sitting for long periods of time is agonizing and I'm having sleepless nights so feeling great !!!!! (Not) I've been prescribed amitriptyline 10mg which I'm taking at night and have been for 11 days since first diagnosed, and diprosone cream which is supposed to help !
My gyno said if symptoms don't improve then see my gp and get them to up my dose , does anyone out there on the same meds as me ? , has it helped ? Not sure when the tablets are supposed to kick in , should I give it more time b4 I go back and see my gp to higher my dose ? I here it can take weeks b4 u feel the difference
Since taking the tablets I suppose I've felt better for about 8 days and now it's flared up again !!!! I'm so frustrated and depressed, please anyone have some insight

Tfc13

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Re: New member desperate need of other vulvadynia sufferers

Post  fairlight10 on Sat Feb 09, 2019 7:39 am

Hi there. We are all going through the same shit on this forum. Persevere with the amitriptyline, you said you are feeling better so I think it is helping you. It takes time to gradually desensitize the nerves. I have been on a similar drug called Nortriptyline. They are both tricyclic antidepressants, used in lower doses they can help with nerve pain. I have been on it for 7 years now. You may need to up the dose but give it a bit more time, then go back to your GP and ask to go up to 20 mgs. You will still experience flares, consider what you eat or drink this can aggravate the delicate area our problem is situated. I ate too much pineapple once and paid for it later. This condition affects the urethera and it can feel like you have cystitis. You will get better but it takes time. Being frustrated and depressed are affecting your emotions and in turn affect the pain we can have with this condition. Try not to be so tense ,it does work. Try and find a position to sit that doesn't put pressure on the vulvar. Some suffers use a cushion with a hole in the middle. I still use one of these when I drive my car. I have put it in a black pillowcase to disguise it. I do hope this information helps you. This forum was a great help to me. Just knowing I wasn't the only one dealing with this horrible condition was a great help psychologically. I also had acupuncture which I found helpful.

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Re: New member desperate need of other vulvadynia sufferers

Post  Tfc13 on Sat Feb 09, 2019 8:41 am

Thank you so much for the reply , am trying to remain calm , as I know stress doesn't help our situation but it's so hard isn't it .
My poor husband bless him , has to put up with it all
He has been a great support , don't know what I'd do without him , but it's nice to talk to some1 who fully understands , as much as he tries , that's why I came on here .
I've cut down on my coffee and have done for awhile as I had constant u.t.i.s so was forever on antibiotics , so now only have 1 cup a day , which I feel better , I'm a pretty healthy eater really eat tons of fruit and veg ,gonna keep a diary I think and see when I get my flare ups , I've had pains aswell in my top thighs round my buttocks too is this normal? I suffer with ibs so I've heard this doesn't help ?
May invest in one of those cushions too!
Thank you again for replying

Tfc13

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Re: New member desperate need of other vulvadynia sufferers

Post  fairlight10 on Sat Feb 09, 2019 9:10 am

Yes,my husband was a great support and helped me when I had a meltdown. Watch out on what fruit and veg you consume. Citrus is not good as this causes your urine to be more acidic and burn or string when you urinate. Also, there is some fruit and veg that are high in oxaltes. Spinach is very high. When I have been on holiday and eat out, I will eat salad and it is served with vingarette dressing, l will have a flare up. Watch out for shampoos if you wash your hair in the shower.These can run down into that area. I pop a flannel between my legs. I don't use anything down there, just rinse with water, don't have a hot bath this can still cause discomfort for the rest of the day. I have found really useful info from some of the girls on this site. Also, UK vulvar pain society have a site, so get reading.

fairlight10

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Re: New member desperate need of other vulvadynia sufferers

Post  fairlight10 on Sat Feb 09, 2019 9:11 am

Yes, you can have pain in your buttocks and the top of your legs.

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Re: New member desperate need of other vulvadynia sufferers

Post  Tfc13 on Sat Feb 09, 2019 10:09 am

I mainly only eat grapes and apples , well that's what I take to work everyday , seldom have citrus fruits , I eat a lot of salad without any dressing , not so much spinach but a lot of green veg
Silly really how the food that's good for you can be not so good for you at the same time
I have been prescribed dermal 500 too which I wash with , and like u put a flannel there when washing my hair , will have a look at that site and get reading thank you for your advice I really appreciate it

Tfc13

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Re: New member desperate need of other vulvadynia sufferers

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